Hi, just wanting to pick everyone's brains.
I have just seen a cardiologist, as my town has no neurologist.
I was hoping, my doctor was hoping, that the cardiologist could give me some help re POTS.
I did the usual tests, saw him in November, he expressed concern re my pulse pressure (which was really high) and pressure which was also high, and sent me off for more tests. I just saw him again.
He is no longer concerned by my pressure (it was 50: 140/90) which he said was normal. The tests showed no heart disease. Which seems to have been his only concern.
He noted some osteoarthritis on the X rays but everything else in every other test was good.
I do not have the results just his interpretation.
At the time I was so relieved that there was nothing physically wrong with my heart that I did not really push him on the POTS, and he had me out the door very quickly with the advice not to contact him unless there is a really big change in my symptoms.
But I did ask his advice re POTS and ... His conclusion re POTS was that there are a lot of different medications that people recommend for it which means that there is nothing that really works.
Which is not going to get me on my feet or keep me there.
The POTS is bad, standing at a good point on a good day I am in the 90s but frequently find myself in the 120s, and once when I checked despite being really lightheaded (and perhaps unduly brave) 196 whilst sitting. (I had pushed it a bit too far trying too cook dinner or wash dishes so that I could cook dinner or something of the sort and had an evening where it just jumped all over the place from mid 80s to 196 and I was consequently unable to do anything and unable to rest).
My resting heart rate is usually about 50, as low as 44 as high as the mid 60s. But when I have had it together enough to measuring it carefully and regularly it has sat in the high 40s and low 50s.
POTS is the major limit on my ability to do anything. It is the bottleneck. When for some reason it is less of a problem I start having issues with muscle pain and muscle failure. But that has not been the case for 8 mnths or so and has rarely been the case for years.
I spent much of yesterday and the previous day in bed. And today, well the same really but I spent a few hours sitting at the computer, and an hour and a half in 30 minute blocks doing a mixture of standing and sitting on a stool while washing and putting away dishes. I have managed to bring the bins in and check the mail - which I cannot always do - and have spent much of the rest of the time lying down. Today has been both unusually vertical (for me) and mostly horizontal.
So the POTS is bad and a major problem in my life.
I know that it improved, became less on an issue in autumn and early winter last year when I was doing oral probiotics, oral liquid nilstat and intermittent fasting. But the improvement was small and all of it disappeared in August and I am not sure why.
I think the improvements may have been due to the work I was doing on my oral microbiome - though at the time I thought it was all about the intermittent fasting, and so was really confused when everything fell apart.
But recently I have been pursuing infection - I have moderate nasopharyngitis and am following Dr Osamu Hotta's approach to that, plus some probiotics. I also recently had some antibiotics to deal with b. hominis (December), am treating athletes foot (with a standard treatment that I hope works better than the tea tree oil I have used unsuccessfully for the last year or so) and am coming to the end of a course of nilstat (tablets).
I am also taking bunch of other things re permeability and inflammation and anxiety (which seems OK at the moment, even when the POTS is bad, but I still feel that I am on a bit of a tightrope re anxiety).
For POTS I am mostly taking salt and potassium. They have a quick and noticeable impact on my heart rate, but it is a bit hard to judge exactly how much I need and I still will sometimes wake up with tachycardia in the night and will generally have some 1st thing.
I also take b complex because something in it seems to work when the salt and potassium don't. I just spread it out in 4 doses, well 2 halves of a b complex and 2 halves of a multi, unless I feel a need for something extra.
I am going to chase my GP to see if she has any ideas, but does anyone here have any ideas of where I should go from here?
I have just seen a cardiologist, as my town has no neurologist.
I was hoping, my doctor was hoping, that the cardiologist could give me some help re POTS.
I did the usual tests, saw him in November, he expressed concern re my pulse pressure (which was really high) and pressure which was also high, and sent me off for more tests. I just saw him again.
He is no longer concerned by my pressure (it was 50: 140/90) which he said was normal. The tests showed no heart disease. Which seems to have been his only concern.
He noted some osteoarthritis on the X rays but everything else in every other test was good.
I do not have the results just his interpretation.
At the time I was so relieved that there was nothing physically wrong with my heart that I did not really push him on the POTS, and he had me out the door very quickly with the advice not to contact him unless there is a really big change in my symptoms.
But I did ask his advice re POTS and ... His conclusion re POTS was that there are a lot of different medications that people recommend for it which means that there is nothing that really works.
Which is not going to get me on my feet or keep me there.
The POTS is bad, standing at a good point on a good day I am in the 90s but frequently find myself in the 120s, and once when I checked despite being really lightheaded (and perhaps unduly brave) 196 whilst sitting. (I had pushed it a bit too far trying too cook dinner or wash dishes so that I could cook dinner or something of the sort and had an evening where it just jumped all over the place from mid 80s to 196 and I was consequently unable to do anything and unable to rest).
My resting heart rate is usually about 50, as low as 44 as high as the mid 60s. But when I have had it together enough to measuring it carefully and regularly it has sat in the high 40s and low 50s.
POTS is the major limit on my ability to do anything. It is the bottleneck. When for some reason it is less of a problem I start having issues with muscle pain and muscle failure. But that has not been the case for 8 mnths or so and has rarely been the case for years.
I spent much of yesterday and the previous day in bed. And today, well the same really but I spent a few hours sitting at the computer, and an hour and a half in 30 minute blocks doing a mixture of standing and sitting on a stool while washing and putting away dishes. I have managed to bring the bins in and check the mail - which I cannot always do - and have spent much of the rest of the time lying down. Today has been both unusually vertical (for me) and mostly horizontal.
So the POTS is bad and a major problem in my life.
I know that it improved, became less on an issue in autumn and early winter last year when I was doing oral probiotics, oral liquid nilstat and intermittent fasting. But the improvement was small and all of it disappeared in August and I am not sure why.
I think the improvements may have been due to the work I was doing on my oral microbiome - though at the time I thought it was all about the intermittent fasting, and so was really confused when everything fell apart.
But recently I have been pursuing infection - I have moderate nasopharyngitis and am following Dr Osamu Hotta's approach to that, plus some probiotics. I also recently had some antibiotics to deal with b. hominis (December), am treating athletes foot (with a standard treatment that I hope works better than the tea tree oil I have used unsuccessfully for the last year or so) and am coming to the end of a course of nilstat (tablets).
I am also taking bunch of other things re permeability and inflammation and anxiety (which seems OK at the moment, even when the POTS is bad, but I still feel that I am on a bit of a tightrope re anxiety).
For POTS I am mostly taking salt and potassium. They have a quick and noticeable impact on my heart rate, but it is a bit hard to judge exactly how much I need and I still will sometimes wake up with tachycardia in the night and will generally have some 1st thing.
I also take b complex because something in it seems to work when the salt and potassium don't. I just spread it out in 4 doses, well 2 halves of a b complex and 2 halves of a multi, unless I feel a need for something extra.
I am going to chase my GP to see if she has any ideas, but does anyone here have any ideas of where I should go from here?